Dr. Fred Levin colleague of Dr. Ameisen

[tom4now]

Dr. Fred Levin colleague of Dr. Ameisen

Well I think your doing well

You sound like your doing well on Baclofen and thats really good...I just wish it was more tolerable...as you said I bet Dr. Ameison must of went through some major sideffects titrating up so quickly but i read his story and like all of us we have this or death by Alcoholism...I wish doctor Amisen maybe could of posted some suggestions of lessening the side effects other then the obvious to go to wear your body can handle the ramping up...he also drank to as well during his treatment up....I started out at 5mg 3x a day then went up to 10mg 3x a day...I too was drinking but not very much at all...I noticed the usual desire right away was gone...but as soon as i quit then the side effects were so severe I am now back down to 2.5mg 3x a day...and at this point my body seems to only beable to handle this so little of a dosage...im very worried can I get my body to go up and I know slowly I have too...I am normaly in good overall health in good shape 190 pound man...this is very dishearting to me as I am sick of my alcoholism and the loses im sure we have all had...it allmosts makes me think the only way for me to tolerate it is to continue to drink a little to lessin the side effects...as Doctor Ameisen did...anways I am glad to hear you seem to be tolerating it as high of dosage you have made it too!!!
Thats really good news!!!

[corkit]

Dr. Fred Levin colleague of Dr. Ameisen

tom, I haven't stopped drinking since I went on it so if that's the secret what irony! Do you usually have problems taking meds? Do you think that maybe it's not the meds giving you the SE but it's really AL withdrawals that did it? I hope the best for you and somehow this straightens out. I also think start low stay on it a week and increase it a little and stay on that for a week, just listen to your body as you move ahead, who knows maybe throw in a little AL.

[tryagain]

Dr. Fred Levin colleague of Dr. Ameisen

Tom4now

I had lots of SE even on a very low dosage the first time I tried and stopped.

I came here and saw lots of other people had them too, but they had persevered. I started again, but did not like the SE, then I backed my dose right back down and am now going up once a week as suggested earlier in this thread and SE are practically nothing.

I suggest going very very slow and take your daily does spread over 4 or 5 times a day to see if that helps?

[Virgil]

Dr. Fred Levin colleague of Dr. Ameisen

If at first...

corkit;843044 wrote: His email has been posted a few times but I will give it again: f-levin@nwu.ed but some have said it goes through better with: f-levin@northwestern.ed.

Hi corkit,

I sent the e-mail yesterday to f-levin@nwu.edu, which is slightly different from the first e-mail address that you provided above. However, it bounced and came back with the message "DNS Error: Domain name not found". I'll try the second e-mail address you have mentioned and, if that fails, I'll change it to .edu - hope one of them works.

Watch this space!

V.

[Brave Hearted]

Dr. Fred Levin colleague of Dr. Ameisen

Sorry am I being nieve here ? but if doctor Levin charges for his advice over the telephone, givng free advice in emails would not make economic sense ?

My advice to anybody is take it slow listen to your body, read the threads on here , communicate on here as much as you can and stick with it the best you can, do what you can to do that take vaccation time or sick leave if you have to to get through it. I took to my bed for a fair few days to ride the worst of the days when the se were awful, but I knew I was in the last chance saloon and had no other option and it paid off !!! yay. Taking a couple of weeks off work sick is better than being a drunk in my book anyday ! and cost a lots less as well.

Goood luck guys it really is worth it in the long run !

[corkit]

Dr. Fred Levin colleague of Dr. Ameisen

Virgil and everyone it should be .edu not .ed I must have given that email address at night. Also, someone said to me they had a hard time getting it to go as @nwu.edu so just spell out @northwestern.edu instead of the abbreviated one. Hope this helps. Thanks Virgil for keeping me on my toes!

Braveheart, if I didn't know Dr. Levin I think I'd be thinking along the same lines as you. As I said before I gave you what he told me to his name and phone number but I have no control over what he does, I only know him for what he's done for me.

[eight days a week]

Dr. Fred Levin colleague of Dr. Ameisen

I thought I made a post here earlier expressing my concerns about Dr Levin's promise of no side effects, but it seems it didn't go through (probably my dodgy computer as always!)

Anyway, I've had significant SEs from the first tiny doses all the way up to where I am now (and I've been taking things very slowly because of them - over two months in and I'm only up to 100mg a day).

I'm sure the good doctor has the best of intentions and is dispensing his advice based on his experience to date (40 patients with zero side effects?) but I'll be writing to him with my observations just to make him aware that people with extremely slow titration can get them, even to a dangerous extent. This is not alcohol withdrawal in my case, these are the side effects from Bac, and they've been present from day one. He might not be aware or experienced enough yet with Baclofen, but imvho it's wrong to make those claims.

Also, I thought it was mentioned earlier (??) that folk should disguise email addresses on here, for example by leaving spaces or writing 'insert at mark here' rather than '@'. Otherwise spambots who automatically and systematically trawl the internet looking for email addresses will find his in a flash, and his email addresses will be full of spam and pretty useless within weeks if not days. He won't be very happy.

Again, these concerns aside, corkit thanks so much for sharing this information with everyone else here and for your continued efforts to help everyone. Bless you

[Cinders]

Dr. Fred Levin colleague of Dr. Ameisen

I just spoke with Dr. Levin. He wants me to call back about 8:30 this evening. I caught him at dinner.

He wants to take down a notation of all my meds and ensure there are no contraindications. I appreciate that so much!!

I will let you know what I find out after speaking with him.

Love,
Cindi

[corkit]

Dr. Fred Levin colleague of Dr. Ameisen

Good luck Cinders, he's really a great guy.

corkit

[Cinders]

Dr. Fred Levin colleague of Dr. Ameisen

I called him back and we had quite a long discussion.

He explained the protocol of advancing forward on the Baclofen. He wants me to go up 20 mgs/week and stay at that level for a week.

I will get getting an Rx soon in the mail. I asked hubby to fill it for me and send it to me in Dallas.

I am very excited.

Love,
Cindi

ps Dr. Levin seems like a wonderful person. I am so ready to do this!!!!

[corkit]

Dr. Fred Levin colleague of Dr. Ameisen

Yeah Cinders, I really don't know how he does it with all the other things he does for a living and then taking calls in the evening from people he doesn't even know. I try not to be a pest with him but he's always very patient with me and to think how many of me are out there calling him! So happy for you and keep us posted on how you're doing.

corkit

[Cinders]

Dr. Fred Levin colleague of Dr. Ameisen

ManLooking4Nothing,

manlooking4nothing;843112 wrote: iam on 330 mg ,still no much hope ....... donno where i went wrong --any suggestions

I am not a doctor or a scientist but after speaking with the doctor last night, he said that the dosage required has nothing to do with the amount we are drinking or our body weight.

It is genetics.

I hope you are working with the doctor. I very much want you to hit that switch so that you can titrate back down to tolerable levels.

I, myself, am absolutely not looking forward to how I am going to feel at high levels and do what I do. But I am willing to do it. I have no choice.

Love,
Cindi

[birdy02]

Dr. Fred Levin colleague of Dr. Ameisen

Thanks, Cindi, for that information. I'm sooo looking forward to you, and everyone else, reaching the switch. It is worth all the aggravation along the way to get there.

Kelly

[corkit]

Dr. Fred Levin colleague of Dr. Ameisen

I agree with cinders, if the doc doesn't get back to you by email (remember he must get hundreds of emails a day baclofen isn't the only thing he does all day) I would call him and if that means staying up during the night or whatever it works out to be for time difference I would call him to find out what to do. Just remember to call 7:30pm - 9:00pm Central Time (US).

Good luck

[Virgil]

Dr. Fred Levin colleague of Dr. Ameisen

Cinders;844281 wrote: ...after speaking with the doctor last night, he said that the dosage required has nothing to do with the amount we are drinking or our body weight.

It is genetics.

Wow, that's quite a revelation and thank you for sharing this information with us, Cinders!

I wonder on what basis Dr Levin arrived at this conclusion. It would be good to know if he has published his findings in a scientific journal. As you have a dialogue going with him, how would you feel about probing this a little further?

V.